Hi all just a quick update on me - I'm in europe starting cycle 13 of venetoclax on my ven plus obinutuzimab phase1b trial at Barts for relapsed and refractory patients. Still commuting every 3 months from Australja for my one day Appt and to collect my Venetoclax but just found out my bone marrow results show I'm MRD negative which is such a relief. I'm continuing on 400mgs a day, am back at work full time in Melbourne, have a completely normal life with my kids,no fatigue and no side effects. Feeling very very lucky!
I'm almost exactly 5 years post diagnosis - I was only 38 and was one week from Christmas with 7, 5 and 2. Had FCR in 2013 and relapsed fairly quickly and started this trial in Oct 2015. I blogged, which I must update - it's abtandme.com.
Best wishes to all
Deb
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Debinoz
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Love it Deb, enjoy. So glad things have gone so well for you. Hopefully some of these new drugs will be available to use on the PBS one day soon. Merry Christmas!
That's awesome news! I've so admired your relentless approach at being your own advocate and getting what you need to be healthy and to be there for your kiddos. They are lucky to have a mama with such a fight in her! May your remission be long lasting!
Deb thanks for sharing your great news, your news is our news too, as your pioneering spirit and fantastic results can only help to spur on others to become more able to self advocate and your efforts will have at the same time added to the progress with combinations like this. This will add to the positive data that will aid new trials in different populations and provide evidence to improve access in the future for many more as the trials progress.
I guess you will be in high demand! Good luck to life restarting and time again with your children.
I love the blog Deb. What an amazing CLL journey you’ve been on - such fortitude and determination! Long may you stay in good health and enjoy normal life with your precious children. Your story is such an inspiration.
Great news. I reached out to you before participating in my trial, and I wanted to thank you again for the encouragement. My travel isn't quite as daunting, and my child is older, but they do keep us going out there at least monthly the whole 14 cycles. I'm now in cycle 7 of obinutuzumab/ibrutinib/venetoclax trial. One question...if you are MRD-, are they planning on taking you off the meds? They aren't sure in my case (I'm a lucky 17p deleted patient) and will decide in June if they keep me on something.
Hi they want me to stay on venetoclax for the time being until we can work out whether I can come off. I'm not having any side effects so, other than the travel involved, I'm happy to. The problem is the lack of access to venetoclax if I can come off it - I can't risk not getting it again and my trial protocol allows me to have it on an ongoing basis as long as I'm not progressing.
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